A Journey of Hope

It was a beautiful summer day. I was riding my bike and my wife, Kathy, was walking. When we met back at our starting point, she said to me, “I’m walking like I had a stroke.” I put the bike aside, stood behind her and asked her to show me what she meant.

For the next six and a half years, we pursued an answer for Kathy’s “drop foot” and other worsening symptoms. Countless doctor visits, tests, and poking and prodding. Sometimes we were presented with what it wasn’t, and other times with what it could be. But, nothing ever definitive.

One fall day I was looking over a brochure about a major teaching hospital not too far from where we lived. It struck me that we should take advantage of this hospital and their exceptional doctors. Kathy agreed, so we made an appointment with one of their neurologists.

Many blood tests, another MRI and a spinal tap later, we finally had our answer.

The phone rang, and we knew it couldn’t be good because the neurologist was calling us on a Saturday. He referred us to another part of the hospital to “confirm” his diagnosis. Shortly after, we had a diagnosis—multiple sclerosis. She was unfortunately diagnosed with the progressive form of this malady.

Although our family’s journey with this disease had been going on for eight years at that point, the official diagnosis continued our journey in a way none of us could have ever imagined.

Kathy continued to work as an eighth grade teacher, but as the disease progressed, she had to use a walker. With further progression, we purchased a wheelchair. In 2013, she retired. She realized that given any type of emergency at the school, the students would have to take care of her instead of the other way around. It was emotional for her. In fact, for several years after, not a day went by that she didn’t think about teaching.

Eventually, I retired to be Kathy’s full-time caregiver. Kathy’s condition has indeed progressed. She can’t walk and can only stand if someone gets her up. The lower part of her body often burns to the touch. She sleeps in a lift chair. Her movements are slow. She is right-handed, but uses her left hand regularly, especially to eat. Getting from point A to point B is essentially impossible unless someone moves her. We go out much less these days.

Our lives have become challenging, but somehow, very rewarding. We clearly laugh more now than we did in the past. Our family knows that Kathy’s well-being–this spouse, mother, and mother-in-law–depends on all of us helping her. It is not easy, and there are many, many frustrating moments. The good news is that through it all, we are surviving.
 
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Me and my beautiful family.
 
MS has hit us hard. But what I know for sure is that the family’s presence and helping hands give Kathy hope. She relies on us, especially me, to get her through the day. It is through and with us that she is able to navigate life.

Truth be told, MS has gotten the best of her and, at times, us. However, as I often say when people ask how she is doing: “Not as good as some people, but a heck of a lot better than others.”
Tags Caregiving, Progressive MS      4 Appreciate this
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Ed

Ed Villella

A former college professor for 36 years, Ed retired in 2015 to take care of his wife, Kathy, who has progressive MS. Ed and Kathy live in northeast Ohio and have been married for 44 years with 3 (now grown) children.

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    6 Comments

  • Regina   May 15, 2018 5:56 PM
    Good men like you are such a blessing to their family. Good men make the world go around. I wish you and your wife many happy years to come together!
  • Eva Marsh   May 15, 2018 6:38 PM
    Dear Kathy and Ed, I was diagnosed 51 years ago and told I didn't have long; however, my review of research brought to light tons of information we never hear about. Please look at my website for simple exercises to overcome toe drop - http://evamarsh.net/faqs/
    I am now 74, fully mobile and symptom free after an interesting life - 2 books worth! Cheers Eva Marsh
  • SmartyPants196   May 15, 2018 10:02 PM
    Bless your hearts. I too spent countless dollars on PT, Dr visits, over four years before my PT lady said "Why havent' they sent you to a neurologist, I think you could have MS" I had been tripping and falling for years, and all they could come up with was sympathetic nerve dystrophy in my foot. When I finally found out what I had I was so happy. Now it explains why I was falling, why heat bothered me, fatigue and my foot drop. Once I did the MRI and spinal tap I too have the progressive kind. I had worked 35 yrs in service to people with disabilities and had to retire early. Yes, like your wife it took me awhile to adapt to losing my life's work, and a Jungian counselor to help with my rage about why "God would take away my life work" Well, after I accepted it I was cleaning out my closet and ran across a box of journals from when I first moved to Oregon when I lived in my tent in the Wallowa Mountains in eastern Oregon. A group of us did timber stand inventory for the forest service. As i sat there reading and chuckling as the men in the crew would tease me unrelentlessly so that I soon got the nickname 'Queen of the come back". So I thought why couldn't I write a book. So I wrote three, 'From the Waters of Coyote Springs" "Felix and Eve" and "the Arrangement" as e books and all three in a paperback book called "The Eve Chronicles". Check out my amazon author page. So the moral of the story is, without getting MS I never would have had the time to write my books.
    My symptoms ten years later haven't gotten worse, I have severe back pain, the right leg partial paraylsis still and fatigue, but when I was working the stressful job I was getting steadily worse but when I quit the progression stopped. My trigger for MS was getting mono when I was 15, an exposure to 245T on a tree planting ground in Mississippi, and low Vitamin D ( Oregon is very dark in winter) and I think the stress of my job, my passion but I didn't know how to set boundaries.
    Now it's all about me, without sounding selfish, it's the best thing that happened to me, getting mS has taught me how to take care of myself, I have 12 ladel full of water to use all day and when I run out I am forced to my bed. So I learned how to use my time wisely and not use it all up at the beginning of the day. I ride my encumbent bike twice a day 8 miles and swim hour long laps twice a week down at the pool. I am the strongest I've ever been.
    I am ready to face what my future holds, my beloved of 26 years is my rock and my gatekeeper for my energy limits. And yes I have my sunhat on!!
    She is so luck to have you, Ed, you are doing God's work taking care of her. And if it was you who had MS she would have been there for you.
    Good luck in the days ahead.
  • sharkmommikki  May 22, 2018 9:25 AM
    Thank you for sharing your story. Stay strong.
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    Seagull  Jun 8, 2018 11:15 AM
    What a story you have, and what an encouragement to others! Thank you for sharing your story.
  • Leana Conway   Jun 15, 2018 11:58 AM
    Right there caregiving with you brother! MS doesn’t stop true love it helps reveal it. Stay strong, my friend
    https://leanaconway.blog/